7.27.2015

update

First off, thank you so much for the outpouring of support for our boy. We are so humbled by the thoughtful messages, calls and visits we've already received.

Pierce is doing well. For those who don't follow us on Facebook, here is a brief recap:
Pierce had a seizure Saturday morning, was taken to the local ER where it was determined he was in a shunt malfunction. Within a few hours, he was airlifted to Duke Children's where he underwent a shunt revision surgery. During the surgery, the neurosurgeon discovered an infection along the entire tract of his shunt. She was baffled as he was asymptomatic (no elevated WBC, temp, etc) and it had been 14 months since his last surgery (typically these infections show up closer to a surgery vs further out). Because of the infection, the entire shunt had to be removed and instead of the shunt, an external drain was placed (essentially a tube that drains the fluid to a bag on the outside). The external drain is very positional, which means Pierce is limited to only moving when the nurse is with him to adjust the position of the drain. He will be in the hospital on antibiotics until they identify and clear the infection (no less that 10 days). Once the infection is gone, he will have another surgery to replace the shunt. Then he will be in the hospital until he recovers and we make sure the new shunt is working well.

Needless to say, he's been through a lot. On top of the surgery recovery and lack of mobility, he's developed an allergic reaction to the antibiotic, so that every time he receives a dose, he gets covered in red, itchy hives. It's pitiful to see.

His IVs keep blowing so they've suggested placed a PICC line, but cannot do so until his infection is clear too. He has been stuck more times than I can count at this point.

We've definitely seen him sick, but this is going to be his longest hospital stay since his NICU days.

We are heartbroken at all he has to endure, but are thankful for the graces that have met us along the way. The entire staff at Duke is nothing but superb. In all of our time here, we have yet to have had a bad nurse or doctor. Incredible.

Funny story: Our boy is handling things in stride and with such grace. He is tough as nails and tougher than any grown adult I've ever met. Yesterday they took him for a CT with contrast to check his belly for any infections, abscess. While he was in "the donut" (his words, not mine), I hear a little voice start talking. It went something like this, "Dear God, Thank you for Needtobreathe. Thank you for Bear, and Bo, and for my mommy's ipad with Needtobreathe music.And thank you for Mr. Ben Rector. Keep my shunt working properly (he hasn't gotten the memo that it is out). In Jesus name, Amen." Y'all I was in tears. The fact that he was just 10 hrs post surgery, still doped up from anesthesia and I'm sure, still had a massive headache, but he still was sitting there thanking God for his favorite band and asking him for healing. It was humbling and so neat to witness. And the funniest part of it all, he gets out of the CT, and the technician says he has a surprise for him. Pierce's response, "yay! I get an ipad." Let's just say the stuffed animal he received was a little lower than his expectations.

Here is how you can pray specifically for our boy:
1. For the infection to be identified (as of now, nothing is growing on the cultures, which is also a mystery), and for the doctors to have wisdom in choosing the right antibiotic to treat it.
2. For Pierce to be free of pain, to rest comfortably and for mercy as he is already stir crazy and only on day 2.
3. For continued protection against any other illnesses that would delay his next surgery.
4. And of course that after this next surgery, he will be back to healthy and able to go home and enjoy the remainder of his summer.

Several of you have asked about care packages. We do have an address for that and will be happy to give it to you if you'd like to send him something. Just email Lindsay at franks.lindsay@gmail.com. Also, if you have the ability to Facetime, our boy would love to chat! Those who know him, know he is very social. He's asked about his friends a lot already and would just love to see them on the ipad. It may help the time go by a little faster. And of course, the best thing you can do for us is to pray.

Many thanks for those walking this long journey with us,

Nik, Lindsay and Pierce


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